PMR with normal labs and having severe thigh pain

Posted by lsm47 @lsm47, Aug 21 6:37am

I was diagnosed with PMR in March 2020. My sed rate and CRP are normal for the past year. I am now on actemra since Nov. 2023. I also have spinal
stenosis. I was wondering if anyone has severe pain upon wakening up in the morning in both thighs for at least one hour and then eases up during the day.
Could this be PMR with normal labs?
Should I make an appt with my rheumatologist?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Is it muscle pain or more in the connective tissue closer to joints where PMR pain usually is?

REPLY
@megz

Is it muscle pain or more in the connective tissue closer to joints where PMR pain usually is?

Jump to this post

I don’t know what it would feel like in the connective tissue. It does feel like severe muscle pain mainly in the back of my thighs, buttocks and lower back. My thighs have deep pain that grabs.
My thighs especially at night itch. I also have AT3 deficiency and factor 5 Leiden. I had approximately 10 DVT’s from the age of
17 to 40. I am now 77 y.o. And taking warfarin since I was 40 y.o.

REPLY

I have severe spinal stenosis that was discovered while I was being treated with Prednisone for PMR. My rheumatologist was very interested in my lumbar CT scan that clearly showed the severe spinal stenosis. While surgery was strongly recommended by a spine surgeon, it became a rheumatology problem since I was taking a high dose of Prednisone.

My rheumatologist tried to address my problem with spinal stenosis but said I shouldn't have taken so much Prednisone to relieve the rather severe radicular leg pain (sciatica) I experienced.

"Patients with symptoms persisting for over 6 weeks can benefit from an epidural corticosteroid injection. Suppose lumbar radicular pain symptoms continue to worsen, and the patient develops numbness and tingling between their legs, bowel or bladder incontinence, difficulty walking, and or sexual dysfunction. In that case, this warrants an immediate emergent evaluation and surgical consultation."

Spinal stenosis shouldn't be treated the same as a PMR problem according to my rheumatologist. My spinal stenosis seems to be manageable as long as my systemic inflammation is kept in check. I still get referred to the spine surgeon occasionally. The surgeon says surgery is "warranted" since I'm off Prednisone. Actemra is now controlling my inflammation but Actemra can be stopped for the time needed in case I decide to pursue the surgical option.

REPLY
@dadcue

I have severe spinal stenosis that was discovered while I was being treated with Prednisone for PMR. My rheumatologist was very interested in my lumbar CT scan that clearly showed the severe spinal stenosis. While surgery was strongly recommended by a spine surgeon, it became a rheumatology problem since I was taking a high dose of Prednisone.

My rheumatologist tried to address my problem with spinal stenosis but said I shouldn't have taken so much Prednisone to relieve the rather severe radicular leg pain (sciatica) I experienced.

"Patients with symptoms persisting for over 6 weeks can benefit from an epidural corticosteroid injection. Suppose lumbar radicular pain symptoms continue to worsen, and the patient develops numbness and tingling between their legs, bowel or bladder incontinence, difficulty walking, and or sexual dysfunction. In that case, this warrants an immediate emergent evaluation and surgical consultation."

Spinal stenosis shouldn't be treated the same as a PMR problem according to my rheumatologist. My spinal stenosis seems to be manageable as long as my systemic inflammation is kept in check. I still get referred to the spine surgeon occasionally. The surgeon says surgery is "warranted" since I'm off Prednisone. Actemra is now controlling my inflammation but Actemra can be stopped for the time needed in case I decide to pursue the surgical option.

Jump to this post

I have the same severe pain every day, and was told it’s from spinal stenosis. The pain level is worse than PMR, and I even have trouble sitting down for an hour or so in the morning. Afternoons are a little better, but by dinner time, it’s so bad that I must be off my feet for the rest of the evening.

REPLY

I was diagnosed with a mild case of PMR, having had normal lab tests, and I only hurt in my upper arms and thighs when I was laying down in bed. As soon as I got up, my pain went away!

REPLY

If you have PMR and thigh pain you might talk to your doctor to see if they can diagnose Trochanter Bursitis. I self-diagnosed then I had my knee Ortho doc medically diagnose. It has become chronic and I am being treated by a sports medicine pain management doctor. I had bursitis in several locations. The trochanter is the worse, very painful.

REPLY

I was diagnosed with PMR around the same time as you. That is the only time that my markers were high. I have been on Prednisone since then at different levels. Why I would drop it seemed that the legs were where the pain was. Did some research and thought I may have had blood circulation issues. Testing indicated no problem with circulation. I also have spinal stenosis. I have had two surgeries for that with the last one in 2019. I often am awakened around 3 to 5 am with leg pain from hip to ankle in both legs. My thoughts are the stenosis is the cause, but need to have an CT or MRI to confirm. I am unable to walk very far without pain. Prior to previous surgeries I would experience numbness and discomfort when standing and talking to someone for more that 10 to 15 minutes. Really PMR could be in remission and stenosis could be my current issue. When dealing with PMR, it is difficult to know if a pain is that or something else. I also have arthritis that seems to raise it ugly head in my shoulder and neck at times. Thanks for your post as it helps me in realizing my leg pain could be stenosis and not PMR. Maybe I can get off the dreaded Prednisone and all of its bad side effects.

REPLY

When I was first diagnosed I experienced what I described as a blanket of pain that wrapped around my hips, buttocks, and thighs. The pain was so severe they thought I might have bone cancer or some type of muscle disorder. My labs are never normal, but those indicative of inflammation have never been abnormal🤷🏼‍♀️ Such a strange disorder. Always a good idea to check in with your provider.

REPLY
@megz

Is it muscle pain or more in the connective tissue closer to joints where PMR pain usually is?

Jump to this post

It's been a while since I've had any pain, but I seem to remember that my pain was more muscular than joint related. But then again, I had a very mild case of it.

REPLY
@janiceem

It's been a while since I've had any pain, but I seem to remember that my pain was more muscular than joint related. But then again, I had a very mild case of it.

Jump to this post

Hi. I think mine is more muscular too. I have had mine for about 8 months and it is pretty severe when I get up in the morning for about an hour or two. Throughout the day it is better but not totally gone.

REPLY
Please sign in or register to post a reply.